HAPPY BIRTHDAY!!

I agree that so many would benefit if they got more aggressive treatment early into the disease process...vs waiting until the poop hits the fan. That being said, MANY with Sjogren's never develop organ involvement or neuro manifestation...so you don't want to over-treat symptoms that haven't developed yet, either. Hard to call sometimes. But I say if there is any sign of neuro manifestation, this warrants immune suppression or IVIG (if SFN is confirmed). Organ involvement should always get immune suppression right away. So I'm fine with most getting Plaquenil, but ANY sign of this going outside the box of standard Sjogren's...it should be aggressive treatment during that oh so, critical window before damage becomes permanent. And for the most part on Sjogren's World, and local support groups that I have attended...they get this treatment when it's crossed over into organ or neuro issues.

I hope you don't think those nerves are dead, just yet. They haven't even confirmed the SFN...but it certainly seems that you have it. But even though, there is proof that IVIG can increase the fiber density and improve the condition/morphology of said fibers. But your 'window' is fading and they are not giving you the opportunity for that improvement...sad!! That being said, my 'window' closed many years ago...like 20 years!! But I can report improvement in both Poly & SFN pain and even 'some' autonomic dysfunction. Not much autonomic, but still noticeable!! IVIG is the ONLY explanation, as it didn't happen until after I started the higher doses for neuropathy related Sjogren's treatment. It's hard for me to experience something good and know that others (like you) can't have the same expectations...only due to where you live and lack of doctor knowledge and willingness to try. We live in a world where knowledge should be easy to obtain ANYWHERE. There is no excuse for why your doctors can't have access to the same knowledge as our doctors (and vise versa)...not in 2017!! If it was 1960 and there wasn't computer access, etc, I would understand....but not now.

Hope you had a great day on your birthday!!